I'm going to see my regular neuro soon and we will formulate a plan. Right now I don't need IVIG. My last was in Nov.
Mike

Unsure, Those O2 numbers are not normal. A tilt table test would be the only way to determine if you have POTS or some other autonomic issue. HOWEVER, if the cause is not that and you have some sort of circulatory or heart issue, that would not be the first test to have!

A pulmonologist can do an overnight oximetry on you. You take home a monitor and do the test at home. I would highly suggest that you get that done right away!!!

You are not getting good doctoring. You need to be aware of what is going on and get the appropriate treatment(s) soon. This is just crazy.

You can do an in-home test on your BP. Lie down for a few minutes. Take your BP. Then slowly stand up and take your BP. Then take it again a minute later.

Orthostatic hypotension: The systolic number (top) drops 20 or more upon standing.

Orthostatic hypertension: The systolic number rises over 20 upon standing.

Don't do this too much, okay? Once is enough. And track what your pulse does as well.

Mike, So, were you referred to a vascular surgeon?!! Geez, did they even check for a clot, either with blood tests and/or an ultrasound? Have they checked you for antiphospholipid antibody syndrome or any of the other ones? 100% blockage is damn dangerous!!! I'm worried about you. Stay hydrated.

Debbie, I'm glad you got some feedback here. I hope IVIG continues to go well. You might want to start a new thread if you have specific questions about a topic, so that you don't get lost in someone else's thread.

Annie

Annie: I was having cramp like pain in my left calf. My GP decided to do the ultrasound and found an artery with 100% block above the knee. He and I discussed and decided if it wasn't interfering with my daily life to let it go. He did talk about referring me to a vascular surgeon. He nor I knew about the complications to my IVIG treatments. He also told me if they put a stent in it that the blockage would likely return. I'm going to discuss my options with my regular neuro who is not aware of this development.
Mike

Ellie,

I was going to say the same as Annie, the heart rate and palpitations sound like postural orthostatic tachycardia syndrome / orthostatic intolerance / autonomic nervous system dysfunction. Do you have a bp cuff that also measures your pulse because I would suggest you carry out a poor mans tilt table test.

Lie down in a semi dark room for 20 mins, no music or interruptions. Take your pulse and bp reading after 20 mins. After that stand up straight, keep legs straight and keep movement to a minimum. For best results stand against a wall - but don't walk! Measure your pulse and bp at 1 minute, 2 minutes, 5 minutes, 7 minutes and 10 mins. If your pulse has risen above 120 beats per minute / or increased by over 30 beats per minute from your base measurement - from when you were lying down then you have postural orthostatic tachycardia syndrome, also known as PoTs.

For more info head to Pots Place also known as DINET where they have lots of info on PoTs and autonomic nervous system dysfunction plus a great forum where people will be able to give you lots of advice.

After you have done your poor mans ttt and if the results are positive contact your GP and ask to have a proper tilt table test. If you are in the UK there is a charity called STARS that can help you and POTS UK that will also help. STARS have a help line and are very good.

I hope this helps, as you can see from my signature I am no stranger to PoTs or ANS dysfunction.

Rach x